I started this as a follow-up comment to several others on the review of The Immortal Life of Henrietta Lacks, but it got so lengthy, I decided to elevate it to its own post.
This book was done with the family's permission, and grudging cooperation. While there appear to be injustices when the situation is viewed through the prism of today's laws and accepted practices, this story started when there were no rules or laws, etc about obtaining permission to used 'abandoned tissues.' What happened was commonly accepted practice. Johns Hopkins personnel did NOT sell HeLa cells---they gave them away to anyone who needed them for research.
Skloot does an excellent job of explaining the evolution of the thinking, the practices, the atmosphere at the time, and the understanding (or lack thereof) of family members when they were presented with tidbits of information. Henrietta's husband had about a 4th grade education (I took the book back to the library so I can't fact-check that one.). No one seems to have remembered about the daughter in the Hospital for Colored Insane. And because no one working with the cells through the years knew who they came from, there was never an attempt to discuss any of this with the family. And the family never knew enough to ask the right questions.
To me one of the saddest parts of the story is the lack of trust and lack of education of her family. Because they had been 'ripped off' or lied to (or whatever else they thought) they found it almost impossible to trust anyone who could help them uncover the truth. Their one 'episode' of 'hiring a lawyer' was disastrous. Even today, it seems they are most upset about not knowing about their sister in Crownsville, not having a headstone for Henrietta, and not being able to get medical care/insurance for themselves.
The book brings out all the warts and wrongs in the medical, research, legal, and social service situations for black Americans in the 1950s up until today. It will certainly be interesting to see if there is something positive to come out of all the publicity surrounding the story.
Skloot gives us an excellent 'afterward' in the book where she discusses the options being considered today. Is regulation needed? How much? What should be regulated? Is the issue really about privacy? Or is it money?
To me the bottom line is the question "Where would the world be if HeLa cells had not been available all these years?"